Celiac Disease

The only reason I got tested for Celiac was because of my sweet but insistent baby sister Maryann. She was diagnosed in December of 2017 and also has an extremely rare skin condition called DH (Dermatitis Herpetiformis) that she suffers from as a side effect of Celiac. I reluctantly agreed to get tested because I didn’t want her condition and also just so she would stop nagging me. If you figure out celiac disease early enough you can reduce complications and side effects associated with it and also minimize damage to your small intestine. I still vividly remember that week in May. I had a really crappy week at work and on my way home from work I listened to a voice message from my doctors office confirming that I had tested positive for Celiac and “I should probably avoid gluten”. No follow up recommended and no referral to a GI. It was an annoying and insensitive short message with no answers or even follow up recommendations for me. My older brother Allen has had celiac for years but he was diagnosed as an adult and has never been very open about it. From conversations with Maryann and some research I’ve done my understanding of the disease is that it is a genetic autoimmune disease. There is no cure for it and if you don’t maintain a strict gluten free diet at all times you are at risk for developing stomach/intestinal cancer, or intestinal/digestive complications and issues. I’ve also learned that about 1% of the population are diagnosed with celiac disease. And everywhere I turn no one seems to know very much about it. I’ve seen a nutritionist, a cooky Chiropracter, a GI specialist, emails and phone conversations with people that say they can help, and I’ve even joined a few celiac support groups on Facebook. I’m still figuring it out but luckily we live in a world of bizarre adversity and crazy theories about food that have pushed food companies to produce a variety of grain-free or gluten free food items. I've had some weird side effects from going GF ranging from lack of energy to hormonal shifts, poor Ron I thought for sure I was pregnant for a couple months with the way I was feeling. I’m about 7 months into a gluten free lifestyle and while it comes with its own set of complications probably the hardest one for me is the social aspect. People don’t understand what it is I didn’t understand it myself before and I still don’t fully get it. There is definitely a learning curve. I’ve had 36 years to enjoy and experience food. I’ve been saying for months that I’m glad it’s me and not one of my kids. Putting a child on a GF diet would be so complicated and difficult. 

Because Celiac is a hereditary disease I had all of my children tested. The kids did so well at the appointment. No one cried or even flinched when they placed the needle. Callie of course was a little anxious (as she usually is about any appointment but it helped that I did my usual routine of not telling her much until we were actually on our way to the lab). Poor little April, they had to try 3 times to draw her blood. She did so good! I had her sit on my lap and we played on the iPad while they stuck her again and again. She didn’t cry but on the third try you could tell she was a little over it. Kicked her legs a little and winced. Mason and Noahs results came back negative. Callie’s results were inconclusive which means that we need to talk to the GI specialist. April’s results were positive. I started crying on the phone when I heard the news. She is my pickiest eater. Her diet currently consists of fish crackers, cereal, pancakes, cookies, apple sauce and hamburgers. Occasionally I can get her to eat frozen blueberries, sliced apples and grapes. But that’s it. She is REALLY picky. Before her blood draw I’ve been telling Ron for weeks “it’ll be fine if any of our kids have it except April.” I’m so thankful my children don’t have any serious health issues I know we are blessed with good healthy and happy children but I’m really nervous for what lies ahead. I am not a fan of being in the kitchen. I’ve never enjoyed spending time cooking and prepping. (Probably why Ron has never gained much weight in our entire marriage, poor man has to live life eating crappy food). I’m going to have to always figure out food for April. Anytime she goes to a friends house, at preschool or nursery at church. She won’t get to eat cupcakes with everyone else at birthday parties. Even going to grandma’s house is going to be hard for her to not raid grandmas pantry. My heart hurts for her thinking about all that she will miss out on and not understand. I don't mean to be so dramatic I realize this is not a HUGE thing. Plenty of people deal with much worse I am grateful for modern medicine and the conveniences we enjoy today. But I do not look forward to teaching April this lesson so early in life. Our ward Christmas party this year was really hard I brought her a couple Gluten Free treats but they didn't look as appealing as the line of cookies on display and I endured a 20 min meltdown about her wanting a cookie with sprinkles. Makes me sad for her. On the bright side she is picking up pretty fast and constantly asks me "Is this gootin foo-weeze" She is such a smart little sweet heart. 
Mason and Noah will continue to be tested about every other year. Because it runs in my family they could develop or trigger the disease later in life. Callie and April will continue to be monitored by the GI specialist. For now Callie is staying on Gluten and April has been GF for about 6 weeks.